Tonight we went to hubby's Aunt's house for a St. Patrick's Day party.  I didn't find out until after we got in our van to leave that Jesse ended up yelling at his cousin and uncle because they started making headache jokes.  His uncle had ribbed him before about it when he went on a trip for a couple days with him and Jesse gave him a smack down then.  I just feel really bad for him that he's getting ribbed yet again.

I just got done with my cycle 2 weeks ago, and some of the family out here just don't get it, nor will they ever.  They act like I make my CH's up just for attention.  How the fuck can you make something like that up???  

Fuck em.  Fuck them all!  They know not what they do.  They have absolutely NO clue what it is like.  They do not live with someone who has them, nor do they get them themselves.  

And I can't help it but say; How dare they ask my husband why, after being diagnosed (a 2nd time mind you) by a neurologist do they ask why I didn't "go further" for help for them when I am already doing everything I can that works for me!  How dare they think I'm just "doing it for attention" (WTF?)!  How dare they not even say all this shit TO MY FACE!!!  Fucking cowards.

Even though I am a strong person, IT STILL HURTS!!  It hurts to be played, it hurts to be lied to and it hurts to have lost something you thought you once had...a good friendship.  Guess one thing that CH's find out for you is who your friends REALLY are.

I hate this disease.  I hate what it does to my family and I hate how lonely it can be when the only ones who understand are the ones you live with and all you guys.  

I wish we all lived in the same community .

I'm sorry for the vent everyone, but this just really struck my nerves tonight.  

love you all,
me

Take a deep breath Mel.  Stress can cause a ch. Yes, we all hate this disease. And yes, we all have relatives that just don't get it.

I can only add that we love you here. We get to PICK out friends, unfortunetly we don't get to pick our relatives.

Go to sleep and relax. You are loved by many.

Mean people suck.

Joe

I am so sorry Mel to hear how mean those people are to you. I know how upsetting it is for Jesse too because I have been in his shoes. I had been asked the same questions by relatives on both sides of the family. I was asked why didnt Daniel stay in hospital to get his headaches "fixed" if they were really that bad. I was even blamed at times to be the cause of the headaches ....

You know what though ? As a supporter, I was upset not for myself but for Daniel and I was always ready to take on the world for him ... and I did .... and I still do. I am sure Jesse feel the same. He loves you and as your husband and supporter, he would stand up for you willingly, time and again.

Now take care, do something really nice for yourself, mean people dont deserve your time and effort.

HUGS

Melissa,
        First let me start with, "People that don't haveheadaches like this will never understand the intensity of the pain"
        You, My Friend are a wonderful,Sweet and Compasionate soul and I know you hurt for everyone as well as for yourself!
 
         Here is my suggestion, go buy a large "Slurpee" for each of the people that dont understand, make them drink it as fast as they can untill they get a good brain freeze!  then make them keep going for a few seconds!
        After they can think, ask them how it was and then as what if you had added a "white hot sword stuck through their head, that should bring about a minor understanding, then tell then how long that pain last with a cluster!
        If they still don't get it the -----in your words--"Fuck it" its not worth waisting your down time on trying to make the blind see!
        You are without a doubt one of my favorite friends here and I just wanted to let you know I had to shut down my "FaceBook for a while, I just didn't have the time for it right now, I will reactivate it soon so I can stay in contact with all of my Facebook friends,   Hold your head up High Sweetheart! You have touched more people on this board than you could ever imagine and I Love You for it!     John

Why would you care what those people think? They all sound like a bunch of a$$holes.

You are better than that.

As difficult as it is to do... try having some fun with their stupidity. Although we know that these headaches are no joke and not a laughing matter....stupidity can be laughable and sometimes humor will diffuse stress as well as enlighten.

I'll never forget the time my sister... god love her... told me that my headaches were a gift from god..... that they were his way of showing me how much he loved me.. by giving me a pain similar to what jesus suffered on the cross....and that I should offer my suffering up to jesus and be grateful that god chose me to bestow such a special sign of love.

after I prayed for a moment.. god gave me the strength to constrain myself from slapping her halfway to heaven...

I told her that from this moment forward... my most fervent prayer would be for god to show her how much he loved her in the form of 12 ch attacks a day and if he felt like it... perhaps he could throw in some leprosy and a titch of ebula.
and then after a weeks worth of that... please see to it that she became stupid enough to believe that god hurts people to show that he loves them.

Why wouldn't I want her to feel "special"?

with warm regards,
Tony

Mel, nobody else really "gets it" but us who suffer from it. Angie say's to me over and over " I see your pain but I do not know what it feels like" nor do I ever want her to.

I can't imagine how badly this made you and jesse feel, and tell him for me how proud I am of him to be in your corner.

As far as the comments from the "joke heads" ignore it. It is not worth the effort with them. Sounds like they have some major issues of their own, the big one for them is understanding human compassion.

This has struck a nerve with me the way you were a victim of someone's cruelness, and they will pay the price for that someday.

I also wish we could all be together in a community or on that Island we talk about. But until then, we continue our march ahead and keep our chin up  to face the next hurdle.

Keep smiling girl, your cycle is over and last night is behind you! Oh, also, you have all of us on your side, just to mention.

It was so hard to fall alseep last night, but inbetween the tears I must have somewhere.

Jesse kissed me goodbye this morning at 5:30 and I've been up since then because I couldn't fall back to sleep.  So, I decided to go online and I am glad I did.  The tears have been flowing since reading everyone's posts and I am glad.  I need this.  I am crying because I am releasing the sadness, the anger and the hurt.  I also have a new mission, and that's to get to the convention come hell or high water!!

I love all of you so much!!!!

We had friends who were scientists - they kept saying that there "had" to be a treatment/cure that Brew hadn't found yet.

We had friends that were very religious - they offered to pray and that God would heal.

People who don't have or live with CH have no clue and are doing their best to make it fit into their own world view.  They may have the best intentions, but you know what they say about the road to Hell . . . .

We keep to ourselves for the most part so we don't have to deal with this crap.

It's so hard to make people care and understand. There is plenty of information that clearly spells this out IF people want to understand. I think some people just lack the abilty to show empathy whether it's CH or many other diseases. It's not a part of their world and they aren't going to allow it to be.

I'm sorry your family has hurt you so much. We want to be a part of our family  but sometimes it just doesn't happen. The CH family is all here for you though.  (((HUGS)))

Charlotte

A man with no arms walked up to a bar and asked for a beer.

The bartender shoved the foaming glass in front of him.

"Look," said the customer, "I have no arms - would you please hold the glass up to my mouth?"

"Sure," said the bartender, and he did.

"Now," said the customer, "I wonder if you'd be so kind as to get my handkerchief out of my pocket and wipe the foam off my mouth."

"Certainly." And it was done.

"If," said the armless man, "you'd reach in my right hand pants pocket, you'll find the money for the beer."

The bartender got it.

"You've been very kind," said the customer. "Just one thing more. Where is the men's room?"

"Out the door," said the bartender, "turn left, walk two blocks, and there's one in a filling station on the corner." 

   I live it every day.  Ya just gotta laugh at the fools

        Kinder gentler Potter

Melissa wrote on Mar 15^th, 2009 at 7:47am:

It's the only way - the only way - to cleanse the soul.

Well, besides what everyone else has already said...THIS jumped out at me:

  Quote:


Why?  Isn't that what husbands are supposed to do for the woman they love?  Isn't it the same exact thing you would do for Jesse if the situation was reversed?  Don't feel bad for him.  He's being a good husband and doing what he's supposed to do.

Have another good cry and then go laugh at Potter.